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Edmonton Islet Cell Transplants For Diabetes Unfunded For Out Of Province Patients

Patients with diabetes awaiting islet cell transplants in Edmonton are stuck in bureaucratic stalemates between provinces over who should pay for the costly procedure.

Introduced with much fanfare in 2000, the Edmonton Protocol pancreatic cell transplants can rid people with Type 1 diabetes of their dependence on insulin injections, and prevent frightening, life-threatening blood sugar crashes.

Sixteen years later, Alberta’s health ministry still considers the treatment experimental. It has stopped paying for patients who live in other provinces to receive the $75,000 infusions.

“It’s been a very frustrating process. I’m hopeful. It seems like a very simple thing to solve, but we’re not there yet,” said Dr. James Shapiro, the transplant surgeon who led the team that invented the technique.

At last count, more than 230 patients have received injections of isolated pancreatic cells. Once implanted into the liver, these islet cells produce insulin, the hormone that allows the body to control blood sugar levels. People with Type 1 diabetes have damaged islet cells that no longer produce insulin properly. The cell transplants are only recommended for people whose sugar highs and lows aren’t manageable with insulin injections, Shapiro said.

Experts in the islet transplant program’s lab accept organs from across Canada, then meticulously extract the islet cells.

Most patients require at least two infusions, bringing the bill to more than $150,000.

Although islet cell transplants are not covered by the Alberta Health Care Insurance Plan, the provincial government pays for Alberta residents to have the treatment, health ministry spokeswoman Carolyn Ziegler said in an email.

Alberta once covered the cost for other Canadians. That stopped in 2014, Ziegler said, which saved the provincial government between $700,000 and $1.5 million a year. Patients from outside Alberta must now have their home province agree to pay for the procedure before they can receive a transplant.

“Patients are stuck in the middle, and we have some big issues there,” Shapiro said.

Of the last eight out-of-province patients to qualify for transplants, three were denied funding from their home province or territory, and five are awaiting a decision, Ziegler said.

On the transplant waiting list now are five people from B.C., one from Manitoba, and one from New Brunswick, in addition to 12 Albertans.

Provincial barriers

Some transplant patients say all provinces should be willing to pay for the experts in Edmonton to perform the transplant, regardless of where the patient lives.

Vancouverite Michael Cole was living in New Glasgow, N.S., in 2013, when his diabetes began causing nerve-racking episodes of low-blood sugar. Despite using insulin, he had episodes of aggression, confusion, panic, and memory blackouts.

Once, he found he had driven more than 60 kilometres down the highway with no memory of how he got there.

“How I didn’t kill somebody, or myself — I still haven’t figured out how that happened,” Cole said.

He moved to Red Deer so he could access the Edmonton-based islet transplant program, receiving two infusions in 2014.

The 54-year-old now lives free of insulin injections and works in the B.C. film industry.

The procedure saved other provinces money in ambulance trips and emergency room visits, he said. Patients cover the travel costs for yearly checkups in Edmonton. Footing the bill for a transplant might save a province more money in the long-term, he said.

Nova Scotia’s health ministry said it doesn’t pay for the procedure, and did not provide an explanation. Manitoba and Nunavut’s health departments said each patient’s coverage is determined on a case-by-case basis. The Northwest Territories would cover the cost if deemed clinically necessary.

Health departments in other provinces and Yukon did not reply to questions, except British Columbia’s ministry. Spokesman Stephen May said via email Vancouver General Hospital has offered islet transplants since 2003, and the waiting time there isn’t long enough to justify sending patients out of province.

Dr. Heather Conkin, a family physician from West Vancouver, sees it differently. Conkin had two islet cell transplants in Edmonton in 2011, and spent five years insulin free.

This year, she had to start taking some insulin injections again, and said she’ll eventually need another islet cell transplant.

The procedure, which costs the province $5.9 million a year, is an “attractive option” compared to insulin therapy or an invasive pancreas transplant, the report said.

Yet, the author concludes, “There are still many technical and medical challenges to overcome before islet transplantation can be considered as a component of standard therapy for adults with Type 1 diabetes.”

Patients’ freedom from insulin doesn’t last for the long term, the report said. The lifelong use of immunosuppressants can cause significant side effects. Organ donations are scarce, the technique needs more study, and insulin therapy is cheaper, the report said.

Shapiro said his Edmonton team’s results have improved significantly since then. At last count, 58 per cent of patients were insulin free seven years after their transplants. That’s about the same success rate as a pancreatic transplant.

Shapiro’s team is also testing a new technique using insulin-producing implants that may not require patients to take anti-rejection drugs.